Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness


Nov 02, 2018 3:25 PM

Hi guys,

My youngest daughter has spent 5 days in hospital this week due to a severe chest infection and possible asthma. During this time I was not sleeping due to her oxygen sats dropping and her requiring oxygen and to be nebulised every 4 hours. Also I was uncomfortable most of the time. Many of you can appreciate how this would have affected my fibromyalgia; unfortunately the staff did not. I was asked if I had taken anything due to me being in pain and walking funny. Then I overslept (from 4am) the nurse woke me at 8am, when I explained I have fibromyalgia and it causes terrible fatigue especially combined with the lack of sleep. She just shot me a look like "yeah right whatever" and walked off. I felt like a shitty mom because of that.

Isn't it frustrating?! Then I got moaned at for using the lift (elevator), when I said I have a disability she literally laughed at me! She said I'm just lazy!

I've seen these hidden disability cards you can register for in the UK - I'm going to get one and literally slap it round the next person to question me!

Needed to vent 😤😡😠

Nov 02, 2018 5:16 PM

What a ignorant nurse, you’d think she’d know about Fibromyalgia, even if she was only a kiddies nurse. I get so annoyed with people like her. It your right as an individual to use the lifts if you wish and she should not be saying anything to you about using the lift.
Maybe you should talk to the head nurse about her attitude.
I hope your youngest is okay and that you be able to take her home soon. Gentle hugs to you both.

Nov 03, 2018 3:22 AM

Oh my god!!! Some people are so arrogant. I can’t believe a nurse would act that with so little concern and understanding. I’m actually getting really mad on your behalf.
Seriously, what is wrong with some people!?!

Nov 03, 2018 4:39 AM

Kew, I am praying for your daughter’s health and that find out what is causing all of her problems. As far as that nurse goes I hope that they do something about her and her additude problem.

Nov 03, 2018 6:53 AM

So sorry for what you experienced. I too have a daughter who has chronic illness. Even a healthy mom would be exhausted with what you’re going through. Praying for you and your daughter.

Nov 03, 2018 12:18 PM

Thanks for the replies guys! She's okay now, back at home with steroids and antibiotics. We're currently following an inhaler weaning programme - if she requires the inhalers again then they'll diagnose asthma. My eldest is asthmatic so I'm pretty used to controlling it.

I'm still really angry about my experiences and it has caused me some anxiety. Due to my chronic pain from fibromyalgia and degenerative disc disease I have problems walking so I was thinking of applying for a blue badge which enables us to park in disabled bays. This experience has stopped me wanting to; I've seen the news stories about people with hidden disabilities being verbally and physically assaulted for parking in a disabled bay legally. What if that happens to me Infront of my children?! The world is so messed up. It's 2018, why are we not more compassionate now?

Seeing all your lovely comments is what I needed, I now just feel sorry for those bigoted idiots 🙏

Nov 08, 2018 6:24 AM

I get similar looks for using lifts & disabled toilets. I didn’t know you could get a hidden disabilities card here in the UK. I’ll have to look into it.

Nov 08, 2018 1:38 PM

Nor me until I researched it in a mood lol I think it's £11 for 12 months registration.

Take care

Love Hayley x

Nov 09, 2018 7:53 PM

Until they walk in our shoes there will always be doubters & critics. I'm glad your daughter is doing better and back home.

Feb 06, 2019 3:49 PM

Sorry about your daughter! Hope she's ok! Terrible anyone in the hospital would give you a look! Shame on them. It is awful but it'll always happen, I've learned to ignore & do what's best for you.

Ready to start relieving your pain?

Join Community